Thursday, June 30, 2016

Deconstructing Marc (Repost)

(I'm still in "hiatus mode", but lest the world forget all about me I'm reposting an oldie but a goodie, a blast from the past, a "best of". Or is it really just a moldy oldie? Guess I'll have to leave that up to you folks to decide. This essay was originally written and posted in March, 2011, long enough ago that I'd forgotten writing it. Thinking back on those days, it's amazing how much more deconstructing the disease has inflicted, stripping away even more layers of the veneer that 4+ decades of life had applied. The words below still hold true, but I must admit that although I understood on an intellectual level how much damage progressive MS could do, I never really believed that I'd reach the level of disability at which I now find myself. But, here I am, five years later, still making waves. Good on me. I hope you find value in the following vintage collection of Wheelchair Kamikaze syllables.)

Multiple Sclerosis is an undeniably destructive force. To various degrees, which change from patient to patient, the disease picks apart bodies, careers, and relationships, intent on scrambling the numberless pieces that make up the jigsaw puzzle that is each human being it touches. As the malady disrupts a patient's physical body, it also forces those afflicted with it to deconstruct themselves emotionally, spiritually, and philosophically as they adjust to the changes wrought by MS. But this deconstruction also forces the patient into a reconstruction, as they gradually shed the self-identifications and the societal expectations that had formally defined who they were, and replace them with a new sense of self that conforms to the ever-changing reality of living with a chronic, progressively disabling illness.

The speed with which this process occurs varies dramatically from individual to individual, as the mutable nature of MS means that no two patients experience the disease in quite the same way. Some can live with the sickness for decades and suffer relatively few setbacks. For these folks, the changes within may be as subtle as the disease itself, barely visible on a day-to-day basis, but more apparent when looked back at from year to year or decade to decade. Other patients, like myself, are hit hard by a more aggressive form of the illness, and adjusting to the physical and mental challenges it imposes requires almost daily manipulations of the mind and body. MS demands a metamorphosis not only from physically able to physically disabled, but from who we were to who we are becoming.

Every person, sick or well, goes through fundamental changes over the course of a lifetime, molded by mounting age and experience. Chronic disabling disease acts as a multiplier for this universal experience, compressing the time span and focusing the intensity of adjustment. The eight years since my diagnosis have seen me undergo changes of seismic proportion, as the landscape of my inner and outer lives have been rocked to a degree I hardly thought possible. Just as residents knowingly living in an earthquake zone are nevertheless shocked when the ground shifts and buildings tumble, people shaken by serious illness are stunned by their being hit with adversity, although we are all aware, even if in the most abstract sense, that accidents, illness, and misfortune are tripwires strung haphazardly across the road of life. Multiple Sclerosis is the kind of horror that happens to other people, we think, not to us. It's a comforting delusion.

After absorbing the initial shock of my diagnosis, for a while life proceeded on almost as if everything were normal. My internal dialogue was changing, as questions about my new disease and the impact it would have on my future were always being sifted, sometimes consciously, sometimes tucked away in the mind's recesses. Initially, my daily routine hardly changed, just as most of those aboard the Titanic, having registered the initial shudder of the ship hitting the iceberg, continued to drink their aperitifs and dance their waltzes, for a few minutes anyway. I got up every day, kissed my wife, showered and dressed, walked the dog, and went to work. There were the usual dinners out, shopping on weekends, socializing with friends. Yes, there was an injection to give myself every few days, but even that held the promise of a sustained normalcy and helped maintain the illusion of control. Soon though, the ship started taking on water; the slight limp in my right leg grew worse, and my right arm became progressively weaker. The descent had begun.

Just as my physical disabilities all too soon demanded attention (an ankle brace, a cane), my sense of self screamed out for contemplation. What had sometimes been a swagger now became a foot dragging limp, the dearly held illusion of immortality replaced by the reality that I was now physically defective and was very likely only going to become more so. I wore a brave face, proud of the fact that my performance at work didn't falter, even as my body did. My well practiced neurotic antics suddenly didn't seem so endearing, and the worries and anxieties that had once consumed me were now rendered trivial, as if a Woody Allen character were dropped into a concentration camp.

This was a new and frightening world I was abruptly required to navigate, filled with its own jargon and customs, a foreign realm of doctor’s appointments, medical procedures, and ever-increasing physical weakness, a place of changed priorities and heartfelt losses, a domain that imposed humility and was best traversed with a keen sense of the absurd. Thrust into this Twilight Zone, I was a character in search of a script, learning my lines on the fly, the psychological and philosophical square pegs that had conformed neatly into the cutouts of my former self now being forced to fit into round holes, requiring them to either be whittled into shape or simply discarded. This disease of the body was also a crisis of the soul, but through the churning turmoil I started to glimpse flickers of clarity, faint at first but soon better defined.

A key moment came when, less than four years after my diagnosis, the disease forced me to go on disability and "retire". Although this cleaving from the working world was jarring and disorienting, it didn't seem as hard for me as it does for some others I've known who've endured a medically forced retirement. Despite the fact that I had achieved a respectable level of success in a highly competitive business, I'd never felt entirely comfortable in the roles I played during my career. I always liked telling people what I did ( TV, video, and DVD production) more than I liked actually doing it, and there were long stretches of my working life during which I felt I had strayed entirely off of my path, even though I wasn't entirely sure what that path might be.

I'd always had literary and creative aspirations, and the everyday grind of life working within corporate organizations, even ones dedicated to creative endeavors, was at best an ill fit. As a youth I'd sworn that I would never get drawn into the workaday world, but like so many who make such declarations, circumstances dictated otherwise. Now, courtesy Multiple Sclerosis, I found myself free, somehow liberated in spirit by the very thing I dreaded most, the insidiously increasing physical disability that was imprisoning my body.

In a case of addition by subtraction, in being forced to let go of the old me I was able to discover the person that lurked within, the person who I might yet be, long buried under years of socialization, expectation, responsibility, and requirement. Like a chef preparing a reduction, intensifying the flavor of a liquid by boiling off its excess, I found that the forced process of peeling back the layers of the person I had become allowed me to find within a truer self, the me that had fed the simmering yearning I'd felt for most of my adult life.

Somehow, Multiple Sclerosis (or whatever I have-click here) thrust me, quite violently, onto a path I'd long given up for lost. I often wonder whether or not I would have still been stricken by MS if I'd had the guts and fortitude to find or fight my own way back onto my path. Was the disease a hammer blow delivered by a universe intent on getting me back on track? Either way, though I despise the disease and the physical toll it continues to take, I like the person I've become much more than the person I was, not so long ago.

It would be nice if the disease would relent long enough for me to fully explore and enjoy this new old road, but over that I have little governance. I can advocate for and educate myself, but the actual healing is out of my hands. The only control I do have is to take the journey moment by moment, focusing on the good contained within each passing now, and accepting the bad as a particularly unpleasant traveling companion. With each day there is night, with each peak there is valley, for every gain there must be loss. Such is the way of nature; such is the way of life…

9 comments:

Sometimes I think you take the words right out of my mouth Marc; although I could never articulate them as eloquently as you do. You are not forgotten - it is nice to 'hear' from you again. Hang in there my friend. I wish none of us had to travel this pitted curving road, but it is nice to know we are not alone.

True heartbreaking words then, and true now. I witnessed the ravages, understand your angst and am revolted that the cause of PPMS has not yet been found. No treatment, no management just degeneration. What a road.Hilda

It takes a lot to make me cry these days, but you succeeded. What a paradox this illness is, crying and finding more joy, degenerating and finding more me. My latest essay about developing dysarthria (oh joy) describes the irony that with this illness I've shifted from pessimistic to an optimist! Go figure. Much love, Aliyah

Marc,Yep, I remember thinking upon diagnosis that somehow my course of Ms wouldn't land me here (some 30+ years later) but it did. Wishful thinking, I guess. The first 20 years - live-able. These last 10 not so much.Dee/OH

You wouldn't remember me, but we first met in cyberspace long ago on the "braintalk" message board, then we met again on the "Thisisms" (TIMS) message board where we followed the CCSVI story as it unfolded. We also met in real life in NYC at Dr. Sclafani's first seminar, and through all the years, you have helped and inspired me more than words can ever tell.

You've given me much-needed hope and courage, a safe harbor within the cyclone of MS, excellent information, laughter and tears, contemplative photography and erudite essays, new perspectives on the meaning of my life and a kick in the ass whenever negative thoughts would start to mess with my head.

You are one of my heroes.

P.S. I sent you an email today with a more private note from me and a link to an important article that I hope you find helpful.

From the new-to-blogs person who's posted on several of yours today: Once again, THANK YOU. By the way, I'm pretty sure in some past life you must have signed on to go through this sh!t to help others -- b/c you most definitely are. Thus, in some future life, you should be king, or maybe a very well-beloved, well-cared-for dog, or something. That is, if one believes in past lives.

Sign up to Receive New Posts by E-Mail

E-Mail Me

Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...